Squamish's Clinton Shard, 28, has lived with Crohn's disease since he was 12 years old.
Crohn's is an inflammatory bowel disease (IBD) that can be debilitating.
But the disease didn't stop Shard from achieving many things since his diagnosis, including an ongoing effort to raise awareness about the illness.
In that vein, he went on an expedition to Mt. Kilimanjaro when he was 16 years old and to Everest Base Camp in Nepal the following year.
After high school, he moved away from Squamish, graduated from university, and worked for a pharmaceutical company, a job that took him across Canada.
Currently, he is back in Squamish. About a decade after our last stories about Shard's journey with Crohn's, The Chief caught up with him for a chat about living with a chronic illness.
What follows is an edited version of that conversation.
Q: What brings you back to Squamish?
A: I feel like the last year has been really reflective for a lot of people in all sorts of ways. I just left the pharmaceutical industry two weeks ago and thought I would move back to Squamish. It works better for my personal life to be outdoors and be back closer to my family. I am taking a little time to readjust.
Q: Can you take us back to when you first found out you had Crohn's?
A: At Christmas when I was 12, I remember my Oma and my mom both looked at me and said, "You do not look good."
That was the start of identifying that I had Crohn's. I got quite sick right from the start.
Thankfully for me, it was a really quick diagnosis. It was within about two months from when the symptoms started — and they can be really general things that are hard to pin down: feeling tired, diarrhea — just not feeling well.
Some people don't find out for years, and that can be really frustrating for folks.
Once you know what it is, you can move on to, 'How can we treat this?"
That is when you get barraged with all sorts of information.
Q: I am imaging as a young person, you didn't really get the gravity of what is happening or want to necessarily follow doctor's orders. Was that the hardest time of this journey?
A: At that time, I understood I was sick, and I knew I had to go to the doctor a lot. I remember getting a blood test and I was so scared. But the wild thing is, I don't think I really knew what I was in for.
In the years that followed after that, I was diagnosed with severe Crohn's disease, which resulted in surgeries, months in hospital. Once I was in the hospital for about two months.
I was sick from about 12 to 16 years old.
This is when I am in my teen years, and you are trying to maintain your social life and play soccer, hike, and climb.
We are a very outdoor-focused family, and having all that stripped away from me very quickly had a big impact on all of us.
It is not just the sick person that lives this; it impacts all the family and friends around the person.
Q: Do you feel like you had a "proper" childhood or adolescence?
A: It was definitely different. My family worked hard to make things as normal as possible. And I tried so hard to have as normal life in my teens as I could — in between hospital stays.
Many friends and family would come and visit. When I wasn't in the hospital, I tried very hard not to be different.
I didn't want to be worried about a chronic illness and wonder if this treatment was going to work or not. When you think about it, when your brain is in that fight or flight mode all the time, it takes a toll on you. I was lucky enough to have parents and people around me who supported me and at the same time, they pushed me to be the best person I could be.
The school, too, was helpful. I had great teachers.
Q: Was there psychological counselling for you to deal with having a chronic illness back then?
A: It wasn't something I thought of as a teenager. I didn't realize until my mid-20s that some certain tendencies or thoughts might stem from it.
With the healthcare providers, the focus is on the physical — which it has to be — but looking back, I think it is so important to have the mental piece addressed as well. It is something that could improve, for sure. For families that do have adolescents with IBD or a chronic illness, it is something to consider. It is the more invisible part of dealing with chronic illness.
Q: With a lot of families, when there is a very sick person, it shifts the dynamic of the family because the person who is sick needs the attention. Can you speak to that?
A: I only knew it from my perspective, but it was something I thought about, especially when I was in the hospital and my parents were switching off coming to stay with me at BC Children's Hospital. I am super thankful that they were so caring, but at the same time, I have a younger brother. I often thought about my parents and my brother and how he would feel about that.
I think the takeaway is that it absolutely impacts the greater family.
Q: How does Crohn's impact you still?
A: Early on, I made a commitment to myself that while Crohn's is always going to be a big part of my life, it isn't going to be my whole identity.
It is kind of crazy, though, how my career trajectory spun off from Crohn's. I was diagnosed with Crohn's disease; I got involved in raising more awareness about this disease because more people have it than you would think.
[1 in 140 Canadians lives with Crohn's or colitis, according to Crohn's and Colitis Canada.]
That desire to raise awareness led me to meet Rob Hill, who was doing all this climbing around the world. He also has IBD. It was through him that I went to Mt. Kilimanjaro and Everest Base Camp in my teen years. After that, I was doing more talks about my experience, and that is ultimately how I got into the pharmaceutical industry after university. Being in that career for the last five years has been incredible — being able to work in an industry that helps people and alleviates suffering. I got to travel all around the world as well with that. Nowadays, I don't think much about Crohn's, but at the same time, there are lots of little reminders, like being tired, having to take medications, there are all sorts of intestinal manifestations.
There are always little reminders even when you are in remission like I am. It is part of my life, but doesn't dominate my life. When it flares up, I give it a couple of weeks to dominate and then I am back to being active and enjoying life.
Q: What have you noticed really helped to stay healthy?
A: It is the classic answer, but I have found that exercise and staying active have helped me more mentally than physically. That is where mountain climbing came in and pushing my mental and physical limits. I know how fragile health can be.
I just want to get it all in as much as I can, knowing that at a moment's notice, it can all be taken away.
It is kind of a good lesson I learned at a young age.
Q: Is COVID-19 a big risk for you?
A: Yes, due to the medication that I take that suppresses the immune system. I am waiting for my vaccine. I should be getting it soon.
Obviously, I have been worried, but more worried about getting it and giving it to my parents, actually.
It is challenging for everybody.
Having the experience of a chronic illness has helped over the last year with the mental worry about COVID.
What I have learned over the last 16 years of having a chronic illness — and knowing it is not if, but when I will get sick — is that you can't worry about what tomorrow is going to hold. You just have to do the right thing and hope that it all works out, or you will drive yourself crazy.
Q: What is your advice for kids and families who may be just starting the road you are on with chronic illness?
A: It is an easy question and a hard question. Everybody's journey with IBD is going to be different. It is important to acknowledge that.
For families dealing with it, surround yourself with support where you can. Don't be afraid to lean on it. It is a challenging thing to go through as an individual and for those around that person.
For me, what I was thankful for is that my family aimed to create a sense of normalcy. Of course, things were far from normal at times, but whenever you can, create that sense of normalcy. Looking back, that is what I am thankful for. It helped me become a fairly well-adjusted individual.
Shard said anyone who wants to reach out to him to discuss IBD can email: [email protected].
